Ventilator rehab hospital recomendations?

Hello,
Are you anywhere near Trevose, PA? I know a nurse who works in a vent clinic and perhaps I could put you in touch with her. I just hope I am right that it is a vent clinic, I would not want to get your hopes up of a possible place. The only way I can get in touch with her is through a post office letter. If you want me to try, just click on the name I use (codystanley) and send me a PM or email with your address and phone number.

I had a severe case of GBS and was in John Hopkins for 6 months before being transferred to a nursing home for an additional 6 months. While in Hopkins, I developed Clostridium difficile and had my large intestine removed under emergency conditions. At the time, I was completely paralyzed by GBS from head to toes, I was in a coma for 3 days, in ICU for 2 1/2 months (2nd longest person in Hopkins in ICU…longest was 4 months and he died), on vent for approximately 4 to 5 months. This was in 2003, and I was 68 years old at the time.

Getting off the vent was one of my hardest tasks. Twice I got off for several days, but went back one once voluntarily and other time involuntarily. Hopkins has a very good program for getting a person weaned off the vent…it is step by step over an established period. It is very demanding in that if you fail to achieve each step, you are forced to go back to the beginning and repeat the whole procedure. It took great deal of effort on my part, over a period of several months, to finally get off for good.

I, of course, do not know how Hopkins compares with other hospitals. It is a large facility, and there is the usual problem, I guess, of being attended by nurses aides who don’t seem to do things with any great care or in a timely manner. I only saw nurses when given medicine (I was on 22 medications at one time) and doctors during scheduled visits every couple days. I also had some depressing roommates, and in my opinion, with strange behavior. Most had been in the hospital for years, and existing in what I consider a vegetable state. Hopkins is a large facility, and not what I would consider a friendly environment. It is a teaching & research hospital that also offers medical care. Many of the doctors and nurses rotate to other hospitals after being trained or completing research at Hopkins, so I think they don’t feel they have a close relationship with the hospital.

If I hadn’t been in Hopkins during the time of my emergency operation, I probably would have died. At the time, Hopkins told my wife I had a 2% change of living. On the flip side, Clostridium difficile is a germ that has become “a menace in hospitals and nursing homes” so if I wasn’t at Hopkins I may not have gotten it?

In any case, I arrived home in July 2004, a year after entering Hopkins. I have an ileostomy that needs constant attending, and I am able to walk in a limited manner using two canes when surfaces are uneven, and one cane on level surfaces.